Lecithin phospholipids and APS

[Ayooshi]

Hello everyone I hope all are well. I was just wondering if anyone knows about taking lecithin phospholipids and if it’s beneficial with those with APS. I have been diagnosed after 3 miscarriages and starting to take supplements and I usually take this Altrient C, vitamin c high dose gel like sachet and it contains 1,000mg of vit c and 1,000mg of lecithin phospholipids, any ideas anyone?!

[HollyHeski Administrator]

Hi, I had never heard of it and would only suggest you discuss further with your specialist.

I did find this information -

webmd.com/vitamins/ai/ingre...

[Ayooshi in reply to HollyHeski]

Thanks for that I had a read of it, I don’t have a specialist, I was diagnosed with the ivf clinic after recurrent miscarriages. My GP does not seem to think I need a referral as I have not had a dvt 🤷🏽‍♀️

[MaryF Administrator]

Hi, please do not take supplements or have radical diet changes unless you are completely under the direction of a specialist who fully understands your Hughes Syndrome/APS. Some can be beneficial but still need to be monitored. MaryF

[Ayooshi in reply to MaryF]

Hi, how would i get to see a specialist? I’m from Cardiff and I have seen from the list here that my local hospital has a couple of specialists but I don’t know how I would get seen by one. I asked my gp and she said I don’t need to be seen as I haven’t had the clots etc?

[MaryF Administrator in reply to Ayooshi]

Wishing you luck with the referral to a specialist, if you are not getting anywhere with your GP do attend with your most trusted, friend, colleague, relative or neighbour to help push this on through. It will be beneficial to your GP to have the right guidance regarding your care from now on. MaryF

[Ayooshi in reply to MaryF]

Yes I will do so it’s just all so difficult, my ivf doctor referred me to a rheumotogist weeks ago and still haven’t heard anything back. Need to chase them up just have been so tired all morning and afternoon that by the time I get around to it the clinics are closed

[Ayooshi in reply to Ayooshi]

Also can I please ask if you know, I want to get a TEG test done before my Ivf starts in about 10 days and I was wondering if you knew if any of them online blood tests would do that and if I would get the results quite quickly?

[Lure2]

Hi,

As I understand you have had a diagnose of Antiphospholipidsyndrom by one or three antibodies positive.

Also with 3 miscarriages you definitely have APS and should not have to wait for a TIA or a Stroke or something else. Many of us have microembolies and micro-clots and they are very difficult to observe on a Scan.

Please ask your GP to refer you to a Specialist of autoimmun illnesses who is knowledable of APS and please do not selfmedicate before you have seen this Specialist!

He will let you go through a lot of other bloodtests probably.

Good Luck with this!